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Patient Advocacy

December 19, 2013

Recently, I had the opportunity to attend the 25th Annual National Forum on Quality Improvement in Health Care hosted by the Institute for Healthcare Improvement. I was honored to be selected to attend this event as a Patient Advocate. Over the course of three jam packed days, I learned a great deal about the importance of quality and saftey throughout the healthcare system and I met many new patient advocates, each with powerful stories.

The first event I attended was the Patient and Family Advisory dinner. At this event, I had the chance to hear e-Patient Dave deBronkart and Pat Mastors speak about building a patient advocacy speaker's profile. They both shared tips on building a strong foundation as a patient speaker and shared stories from their own careers on how they've become the top level speakers in the healthcare community. I also had the chance to meet many people from IHI, including Martha Hayward. She leads the Public and Patient Engagement initiatives at IHI. It's very clear that patients are at the center of IHI's focus and mission. I was really impressed at how many patients were represented throughout the event.

There were amazing keynotes and breakout sessions, but my favorite part of the forum was the booth in main hall labeled: "The Patient is in!" During the entire event, this booth was staffed by patient volunteers who were there to answer questions or talk through issues that forum attendees might be having back at their home hospitals or organizations. To me, this truly embodied the patient centered focus of the IHI. I've attended many healthcare conferences over the past years, but none where the patient perspective played such a visibile role. As a patient advocate, I found the event to be encouraging, inspiring, and energizing.

I also had the chance to learn more about the Partnership for Patients. IHI's work with the Partnership for Patients centers around 10 core patient safety areas of focus and include:

1) Patient stories and experiences can help provide a unique perspective on the quality and safety initiatives for an organization. Don't discount the power of the patient experience.

2) IHI is committed to incorporating more patient experience in all facets of their work.

3) More patient advocates need to step forward and share their experiences, both good and bad, to help all healthcare organizations develop a true quality and safety mindset. Without patients, quality and safety initiatives will always fall short.

For me, the biggest lesson I learned attending this Forum is how dedicated IHI is to improving patient safety by including and acting on the patient perspective. I was honored to attend!

November 22, 2012

As a patient, I define participatory medicine as working in a collaborative way with my doctors, nurses, caregivers, and family members for the ultimate goal of improving my health. As a 20+ year cancer survivor, I'm fortunate that my healthcare has always been handled in a participatory way. I've learned very early in my cancer journey how important strong communication is with my healthcare team and my caregivers. I've learned everyone working to restore my health, including me, need to work from the same set of information. When doctors don't communicate with other docotors or even their patients in a timely manner, the patient suffers. When a patient and doctor work together to understand the patient's diagnosis and treatment options, and share information about the path they need to take to restore the patient's health, the outcome is always better.

Fortunately, more and more patients and providers are understanding the importance of Participatory Medicine. As a member of the Society for Participatory Medicine, I've had the chance to meet so many patients and providers that truly live the participatory medicine mindset. The Society is working very hard to create a framework and dialog for improving healthcare for everyone.

Participatory Medicine is a cooperative model of health care that
encourages and expects active involvement by all connected parties
(patients, caregivers, healthcare professionals, etc.) as integral to
the full continuum of care. The ‘participatory’ concept may also be
applied to fitness, nutrition, mental health, end-of-life care, and all
issues broadly related to an individual’s health.

I think this is an excellent definition that helps us all recognize the importance of creating stronger, more collaborative relationships with our healthcare providers and family members when working to acheive our best health.

I am a Participatory Patient

I've been a participatory patient from the first day I was diagnosed with Hodgkin's in 1991. It hasn't been an easy road, but I know I've been fortunate to work with providers and healthcare teams that worked with me to help restore my health.

September 08, 2012

Please accept this blog post as my application for a travel scholarship to attend the upcoming Partnership with Patients Summit in Kansas City, MO on September 21st.

I would be honored to attend this powerhouse event in Kansas City. To me, this is the event of the year that I need to attend. With the incredible speakers on tap to present, I simply cannot miss this event. The opportunity to learn from the leaders of the epatient movement, including Regina Holliday, Dave deBronkhart, Casey Quinlan, and Trisha Torrey all at the same time is a dream come true! I have followed so many of these key pople for so long on twitter or Facebook.

While I've had the chance to meet some of the folks that will be attending, the chance to finally meet so many of them at once and have the chance to network with other members of the Society for Participatory Medicine is truly a once in a life time chance. I know I'll come away from this event, with a renewed passion and drive that will allow me to take my work to the next level for these wonderful organizations.

As a three time, 20+ year cancer survivor, I'm truly a "professional patient." As a member of the Patient Family Advisory Council at Tufts Medical Center, I'm working hard to make sure the patient voice is heard, recognized, and respected as a key person in a healthcare team.

With my work in social media to develop virtual support communities like #BCSM (Breast Cancer Social Media) with a fellow breast cancer surivor, Jody Schoger, and Dr. Deanna Attai, I can certinaly share everything I've learned on how to build vibrant communities working to solve critical healthcare issues from the patient perspective.

As Community Manager at the HIT Community, I'll also use my enginering background to help make sense of the work currently under way in the health information technology industry. My goal is to make sure that patients understand how health infomation technology can ultimately improve their health outcome. Understanding the importance of electronic health reacords is very important to me. Networking with individuals while in Kansas will help me expand on a successful series I've started collecting EHR Journeys Stories from physicians and healthcare providers. Meeting more people that are willing to share their stories is main reason why I'd be honored to attend.

Everything I learn at the Partnerships with Patients event will be put to immedidate use, throughing blogging about the experience, to telling my fellow PFAC council members about the journey. While some might think this is "just a travel scholoarship," I say it's a grant to attend, meet, hug, and connect with some of the most influential patient advocates working very hard to improve healthcare for patients around the world. I'd be honored to be included in this once-in-a-lifetime summit.

Thank you for the opportunity to submit an entry for your spconsideration.